Shelley Singer has been the primary caregiver for her husband, Michael Gross, since he was diagnosed with Alzheimer’s disease four years ago. Then came the coronavirus pandemic. “It’s very difficult to live with someone with dementia, and I know how fortunate I am to be able to have help from caregivers during the day,” said Singer, 70, who lives in Bethesda, Maryland. “Dealing with someone with dementia in an unprecedented crisis - there’s just no road map for that.”
Gross, 75, a former attorney, real estate developer and established painter, is in the moderate stages of Alzheimer’s and still lives at home with Singer. While she’s grateful for the help from caregivers, there have been losses and changes in their routine, and in that of others in the region. Social distancing means that her husband’s former therapeutic social program, the Friends Club, which meets four times weekly, has had to close its doors for the first time in 30 years. And the Friends Club Caregivers Support Group, to which Singer still belongs, has had to switch to online meetings.
Singer said that her husband used to love watching the news, but she now tries to keep him away from it. He gets confused that things on TV are happening to him. “I tell him the coronavirus won’t happen to us, and I remind him that he’s safe, and that calms him,” Singer said. But she feels that he’s cognizant enough that he’s taking it in on some level. “We’re all nervous and afraid, and he intuits that. I never show him any fear, because he relies on me to keep him safe.”
According to the Alzheimer’s Association, there are 5.8 million Americans aged 65 or older who are living with Alzheimer’s disease, and more than 16 million Americans provide unpaid care for them. Beth Kallmyer, a social worker and the vice president of care and support for the Alzheimer’s Association, said that caregivers should be aware that although people living with dementia might not be able to understand exactly what’s going on, they can react to people’s stress levels. The Alzheimer’s Association reports that about 60% of family caregivers looking after people with dementia or Alzheimer’s disease report that the emotional stress of their role is high or very high. Those numbers are likely higher given the current pandemic.
Kallmyer said that it’s important for families caring for a loved one at home to “have a plan in place in case the usual caregiver gets sick. It’s vital to have those difficult conversations sooner rather than later, so they can decide how the care plan would be handled in different scenarios.”
They also need to observe their loved one even more carefully than usual. “There’s also a heightened concern that a person living with dementia might not be able to communicate their symptoms if they are feeling unwell,”Kallmyer said. “Caregivers need to watch for a sudden change in cognition (not a more gradual change), because it could indicate a fever and the need to notify a health-care provider.”
According to the Alzheimer’s Association, family members and friends provided nearly $244 billion in unpaid care to people with Alzheimer’s and other dementias in 2019. And nearly a quarter of Alzheimer’s caregivers are in the “sandwich generation,” meaning they care for both someone with the disease and their own child.
Erynn Marcus, a 45-year-old mother of two from Toronto, feels that squeeze. She is part of the care team that helps with her 79-year-old widowed mom, who is living with Alzheimer’s disease. Her mom lives in an apartment with her full-time live-in caregiver, Fatima Hermosa, and coronavirus is putting more strain on everyone.
“Before coronavirus, my siblings and I would have a rotating schedule so my mom would get some social interaction and we could ensure her caregiver gets a weekend break,” Marcus said. “That has stopped, and we’re having no physical contact. My mom is not completely aware of what’s going on, and she’s curious why we can’t come into her apartment or why we can’t have long visits anymore. I tell her there’s a virus and we need to keep our distance for her safety, but a minute later, she forgets.”
Marcus is in touch with Hermosa a few times each day and also gets a daily written report. She said Hermosa is focusing more on hand-washing and hygiene -- which is important to keep COVID-19 at bay but difficult for those living with Alzheimer’s to comprehend -- and is trying to maintain a daily schedule to stay somewhat normal in a time of chaos. “I guess the blessing, though, is that my mom doesn’t know the extent of what’s happening with coronavirus, so she’s not afraid,” Marcus said.
Other family members are unable to see their loved ones at all. Ken Gregersen of Ankeny, Iowa, is counting the days he’s been apart from his wife of 67 years, Evie, who is living with Alzheimer’s disease and has been staying in a care facility for the last three years. The state of Iowa recently imposed restrictions on visitors to help stop the spread of COVID-19. “I literally have not seen her now for 10 days,” he said.
Instead, Gregersen, 88, spends the early mornings riding his bike around town. “It provides fresh air, exercise, and it keeps me from having any direct contact with other people,” he explained. Before the ban on visitors, he would visit Evie, 87, three times a day to feed her meals. “That was one way that I could still be a caregiver for her and connect with her,” Gregersen said. He’s grateful that she’s able to get hospice care and is looked after in his absence, but he misses his frequent visits.
The Alzheimer’s Association reports that 48% of nursing home residents are living with Alzheimer’s or other dementias. Although dementia doesn’t increase their risk of developing COVID-19, they typically are older than 65 and may also have underlying health conditions that can lead to more serious outcomes if they fall victim to the virus. “Limiting visitors seems really harsh and difficult, but it limits who is exposed to the virus, and in the end, it’s for everyone’s best interest even though it’s psychologically distressing,” Kallmyer said.
It’s also in everyone’s best interests for the caregivers to practice self-care. “The person with dementia is going to react to the stress level of the caregiver or family,” Kallmyer said. “So if the caregiver needs to take a break, or take a walk, or do some meditation, or some cooking together to get their mind off things, it’s going to be really important to fill their days with things like that to decrease the level of anxiety.”
“We can no longer do the things that used to be the escape hatch, like going to the library or movies,” Singer said. So she tries to find control amid chaos in other ways. “I’m a big organizer,” she said. “I was an event planner in my career, and when things are the most out of control, I like to organize.”
Seventy-four percent of caregivers of people living with Alzheimer’s disease say that they are concerned about maintaining their own health since becoming a caregiver. Gregersen practices self-care by connecting with people through Alzheimer’s support groups. He volunteers for the Alzheimer’s Association, where meetings are now exclusively conducted via conference calls or online.
He’s also been using online technology to connect with his wife. “The most delightful thing for me is the extra nursing care that Evie gets from hospice, because the nurse calls me and puts Evie on FaceTime or Skype so I can use my iPad and see her. I can actually talk to her, and hopefully she hears me,” Gregersen said. It’s a great bonus but doesn’t totally fill the void. “When all this is over, I’m looking forward to seeing Evie when we can touch and hug each other again,” he said.
While some caregivers are fortunate to have backup and support, not everyone is as lucky. “I take my hat off to the people with no help at all,” said Singer. “For them, there’s no such thing as a break. You’re just on, even when you’re sleeping.”
Rosenbloom is president of Words to Eat By, specializing in writing, nutrition education and recipe development.